People with Lived Experience

People can only offer relevant experience if they have a clear understanding of the issue(s) and the specific ask. It is easier for a team to make progress when everyone starts on the same page.

What, when, why:

What?

• What is the project?
• What is the goal?
• What is the scope of the project?
• Over describe and be abundantly clear. Provide a clear description, using plain language and spell out any acronyms.

When?

• Time commitment
• Dates
• Duration of involvement

Where?

• In-Person or Online
• Location

Engagement

Type of Engagement:

• Inform/Educate
• Gather
• Discuss
• Involve
• Partner
  

Categories and Definition/Methods of Engagement:

• Partner: An ongoing joint venture, involving people in every aspect of decision-making - from the early stages of defining the problems to developing and selecting the most promising solutions. People with lived experience are full partners with program staff. They are fully engaged from the start of a discussion around policy, programming, implementation, etc.
  • Examples include members of a team, governance boards, and improvement initiative work groups.
    
    
• Involve: People play an important role in innovation/quality improvement efforts, but are still viewed as "advisory," with no role in decision-making. People with lived experience are advisors to program.
  • They are provided program challenges to problem solve. Examples include Advisory Councils, world café and town halls.
    
    
• Discuss: Providing information so that people can respond with their viewpoint. The team commits to consider the input, not to incorporate people's perspectives into ultimate decisions and strategies. People with lived experience and staff discuss issues. The program provides opportunities for input and programs. The input is used in the program or activities. Typically input is offered through discussions which include give and take with opportunity for clarification.
  • Examples include focus group, interviews and discussions.
    
    
• Gather: Collecting information from people and listening to their insights. People with lived experience are informers. Their input is solicited through opportunities to provide feedback. Input may not always be incorporated.
  • Examples include surveys, interviews, and suggestion boxes.
    
    
• Inform/Educate: Communicating to the people you serve, and educating them about innovation efforts. People with lived experience are recipients of information and education. They are informed about the program and activities.
  • Examples include brochures, posters, and newsletters.

Method of Engagement:

• Interview
• Survey
• Feedback panel
• Retreat
• Focus group
• Meeting
• World Café
• Town hall
• Webinar with Q&A
• Advisory committee
• Be part of a work team

Engagement Methods

Inform/Educate:

• High Touch
  • Face-to-face education
  • Newsletter
  • Brochure
  • Posters
• High Tech
  • Website
  • Mass Media
  • Email/ Texts
  • Social Media

Gather

• High Touch
  • Face-to-face inquiries
  • Suggestion boxes
  • In-person interview
  • Shadowing
  • Mystery shopping
• High Tech
  • Electronic surveys
  • Phone interview
  • Webinars with Q&A

Discuss

• High Touch
  • Targeted meetings to clarify input
  • Focus group
  • 1:1 in-person discussion
• High Tech
  • Google hangouts
  • 1:1 phone discussion
  • Online forums

Involve

• High Touch
  • On-going feedback panels
  • People occasionally join program meetings
  • Town halls
  • World Café
• High Tech
  • Virtual town halls
  • Panels via video conferencing

Partner

• High Touch
  • People join ongoing program meetings
  • People learn content and help decide what changes to make
  • Retreats
• High Tech
  • Use collaborative documents
  • Use video conferencing

Invitation

Support Provided?

• Logistics
• Compensation
• Staff support

How to Ask?

• Letter
• PSA (Public Service Announcement)
• Social Media
• Phone call
• Email
• Over lunch

Why Me?

• What experience are you asking me to share?
• How is this information going to be used?
• What skills are you seeking?

 

Linking to the MCH Leadership Competencies. Understanding how to specifically ask PWLE is a key component of the skills section of the MCH Leadership Competencies. Click the links below to access trainings that support the related sub-competencies.

• 8S6: Collaborate with organizations that are led by people with lived experience to build and deepen involvement across all MCH programs.
• 8S7 Use feedback from people with lived experience, and community members, obtained through focus groups, surveys, community advisory boards, and other mechanisms as part of the project's continuous quality improvement efforts. Monitor and assess the program overall for effectiveness of partnerships between professionals and people with lived experience.

Implementation. Remember, the key to effective partnerships with PWLE:

• Shared decision making, involving self-advocates and/or the family, in planning and implementing activities.
• Addressing the priorities of people with lived experience using a strengths-based approach.
• Recognizing the agency of self-advocates in decision-making as they approach transition age, and across the lifespan.
• Connecting people with lived experience to needed services.
• Acknowledging that the effects of the SDOH, and broader systems of care, greatly impact individuals with special health care needs and developmental disabilities.

• Participatory Planning: Improving Your Community Engagement Efforts. Year Developed: 2019. Source: APA Chapters & Divisions. Presenter(s): Alison LeFlore, Michelle Moon, Claudia Paraschiv, Adrianne Schaefer Borrego. Type: Webinar. Level: Introductory. Length: 90 minutes.
• Setting the Stage: Creating the Space for People With Lived Experience to Thrive. Year Developed: 2022. Source: Administration for Children and Families.  Presenter(s): Eshawn Peterson, Shawn Powell, and Katie Biron. Type: Webinar. Level: Introductory. Length: 42 minutes.
• Creating Inclusive & Anti-Ableist Triage Policies. Year Developed: 2023. Source: Disability Rights New York. Presenter(s): Laura Guidry-Grimes, Katie Savin, and David Whalen. Type: Webinar. Level: Introductory. Length: 60 minutes.
• Authentic Engagement: People with Lived Expertise Shaping Homeless Programs and Policies. Year Developed: 2023. Source: Community Action Partnership. Presenter(s): Josh Johnson, Samantha Wood, La’Toya Cooper, and Jon DeCarmine. Type: Webinar. Level: Introductory. Length: 60 minutes.
• Collaboration and the Early Years: Exploring the Benefits and Challenges of Integrated Working. Year Developed: 2022. Source: Anna Freud National Center for Children and Families. Presenter(s): Marvyn Harrison, Claudia Coussins, Sanjana Jio, and Abigail Wright. Type: Panel Discussion. Level: Introductory. Length: 90 minutes.
• Health Equity in Action Summit – Collaborating to Improve Maternal and Child Health Outcomes. Year Developed: 2022. Source: Pfizer. Presenter(s): Jamila Taylor, Angela Aina, Brisa Urquieta de Hernandez, and Jamila Perritt. Type: Conference Panel Discussion. Level: Introductory. Length: 55 minutes.